Roles and responsibilities

Staff will have many responsibilities in end of life care which will range from including:

having sensitive conversations with individuals about their care and preferences

recognising any changes in conditions

offering compassion and support to the patient and those important to them.

This will require a broad variety of skills and an awareness of the values which underpin this behaviour. Compassionate care has to be at the forefront of all nursing and even more fundamental in the provision of caring for dying people and those close to them.

Source: NHS England – Our Culture of Compassionate Care.

When providing end of life care, ensure you:

Treat people compassionately

Listen to people

Communicate clearly and sensitively

Identify and meet the communication needs of each individual

Acknowledge pain and distress and take action

Recognise when someone may be entering the last few days and hours of life

Involve people in decisions about their care and respect their wishes

Keep the person who is reaching the end of their life and those important to them upto date with any changes in condition

Document a summary of conversations and decisions

Seek further advice if needed

Look after yourself and your colleagues and seek support if you need it

Nursing care

“Palliative Care is about putting life into a patient’s days not days into their lives” – Nairobi Hospice. Nursing & Health Survival Guide: Palliative Care (2014).

Although at times challenging and emotionally demanding, when you are supported to have the right skills, knowledge and attitude, end of life care can be very rewarding.

End of life care is provided in a range of settings which include care in the community, a hospital, care home, hospice etc. Regardless of care setting, the quality of care should be of the highest standard.

When it is recognised by nurses and doctors that a person may be dying, this needs to be communicated in a sensitive and compassionate way to the dying person (as appropriate) and those close to them.

How we communicate with the person who is dying will depend on each individual case. This is extremely sensitive area and should be patient led, with gentle, honest answers using language the person understands. At no time should the conversation continue, if there is any indication that the patient doesn’t want to continue. Staff should always be mindful that some patients will not want this conversation and therefore it should not take place. However, it is crucial that conversations should take place with families to prepare them for impending death.

Care of the person

When you provide good nursing care for those at the end of their life, you will be providing holistic care including providing physical, emotional, psychological and spiritual support. The individual may be a patient, but remember they are also another human being that may be feeling lost, confused and have questions about their nutritional and hydration needs. Equally, the person may not come to you with questions, preferring to keep them to him or herself, or discuss with another person of their choosing. It’s important to let the person remain in control of who they wish to share these issues with. Don’t forget that those close to the individual may also be looking for support and information.

It is important to be sensitive to people’s needs in relation to nutrition and hydration. If someone has a question, try your best to answer it if you are able, or make sure you seek advice from a more senior member of staff if you aren’t sure.

Understanding the dying process

Caring for a person during the last few weeks and days of life can be stressful and demanding. Many different feelings and emotions may surface from all those involved.

Recognition of dying is actually quite complex. This is acknowledged in the literature and in reports regarding end of life care, such as More care, less pathway (Neuberger 2013) and Dying without dignity (Parliamentary and Health Service Ombudsman, 2015).

It is useful for staff to use prognostic indicator tools in the last year of life. For example, the Gold Standards Framework (GSF) and the Palliative Performance Scale 2 (PPS).

When it is recognised by nurses and doctors that a person may be dying, you then need to communicate this in a sensitive and compassionate way to the person and those close to them. It is also important to communicate why it is only necessary to provide minimal hydration.

A key part of the nurse’s role is being able to come alongside the person who is dying and those close to them and to support them throughout what is a natural process.

There are physical signs of the natural process of the person’s body gradually slowing down. Sometimes these signs appear a few hours before death, and sometimes it can be a few days. We look further into the signs of dying in another section of this module and the impact this has over nutrition and hydration.

Seeking support

Caring for people at the end of their life can be rewarding, however it can also be emotionally demanding at times. Peer to peer support, providing a supportive workplace, using reflective practice supervision opportunities, defusing and debriefing are all ways of dealing with these emotions.

There are places where you can go to get support if things are getting to much. Consider speaking to your manager, occupational health or spiritual care team in the first instance.

Principles of record keeping

The overall principles of record keeping, whether you are writing by hand or making entries to electronic systems, can be summed up by saying that anything you write or enter must be honest, accurate and non-offensive and must not breach patient confidentiality. If you follow these four principles, your contribution to record keeping will be valuable.

>More specifically, you should always ensure that you:

handwrite legibly and key-in competently to computer systems

sign all your entries

make sure your entries are dated and timed as close to the actual time of the events as possible

record events accurately and clearly – remember that the patient may wish to see the record at some point, so make sure you write in language that he or she will understand

focus on facts, not speculation

avoid unnecessary abbreviations – as you’ll find, the health care system uses many abbreviations, but not all workplaces use the same definitions: for instance, ‘DNA’ means ‘deoxyribonucleic acid’ in some places, but ‘Did Not Attend’ (meaning a patient who does not show up for an appointment) in others – avoid abbreviations if you can!

record how the patient is contributing to his or her care, and quote anything he or she has said that you think might be significant

do not change or alter anything someone else has written, or change anything you have written previously; if you do need to amend something you have written, make sure you draw a clear line through it and sign and date the changes

never write anything about a patient or colleague that is insulting or derogatory.

When you’re writing, always follow the principles described in the section written communication and remember, if you find something you feel is significant when you are working with a patient, your first duty is to report it to the registered nurse in charge before you would consider writing it in the patient’s record. Always report first, record later.